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Archive: October 2013

Westward Bound

If you can read this, we’re on our way home to Cleveland.  Somewhere on the Pennsylvania Turnpike, at a rest stop or from a passenger seat, I’ve tapped the Publish button in the WordPress iOS app, sending this post forth to tell the word that the second phase of Rebecca’s treatment has come to an end, and we are finally, after so many weeks, on our way home.

Technology has lifted us in so many ways, big and small.  The ability to fly Rebecca to CHOP when she was unconscious and at risk of her life.  The equipment used to remove the tumor that threatened her, the machines that monitored her brain activity, the shunt that keeps her intracranial pressure low, the arterial port in her chest wall, the massive equipment that fired protons into her skull on precisely calculated vectors into a precisely mapped volume at the center of her brain.  The wireless interfaces to the global networks that let us keep in touch with friends and family, watch a movie on demand, research treatment options, buy supplies to be delivered to our temporary residence in Philadelphia, videoconference with our children and parents back in Cleveland.  The ability to draft this post ahead of time and then simply publish it with the touch of a button.

People have lifted us in so many ways, big and bigger.  The relatives and friends who rushed to our side without a second thought, who did what we asked when we asked without hesitation, who came to see us throughout the whole extended process, who organized to feed and support the family we left in Cleveland, and who came in force to walk for Rebecca and for cancer research.  The Philadelphia friends who came to see us for a few hours here and there, who gave us brief breaks away, who checked up on us to see how we were doing.  The wonderful people at the University City Arts League, where Rebecca was able to take painting and dance and hula-hoop classes in the afternoons.  The fantastic staff at Morey’s Piers, who made sure that the one weekend we could have in Wildwood with the whole family was the best it could possibly be.  The incredible staff and even more incredible volunteers who run the Philadelphia Ronald McDonald House, who housed us and fed us and gave us a calm and welcoming space where Rebecca could play with other kids.

The web community lifted us in ways so varied and vast that they very nearly defy belief.  When I put out the first call, you were there, instantly and in force, hundreds of you, replying and favoriting and retweeting and liking and commenting and emailing to show your support, your regard, your care.  So many well wishes came our way, and every one of them helped us.  They’ve continued to help us throughout the process, as people have checked back in or just let us know that they’re still thinking of us.  Because whatever you may think about the efficacy of prayer and warm thoughts and good vibrations and karmic loans with regard to medical issues, there is no doubt that the expression of those things help in this way:  they let those who are struggling to deal with terrible choices know that they have a support network and resources to draw on, should they be needed.  That is a bigger deal than you can imagine, unless you’ve been there yourself.

All those things got us through the first phase, the initial surgeries and recovery; and then through the second phase, the radiation treatment and initial chemotherapy.  We’re headed back to a month-long resting period, a brief window of no treatments… and then the third phase will begin: a year (or more) of intensive chemotherapy that will likely have serious side effects, but offers the best chance of eradicating whatever cancer cells may have survived the resection and radiation.  This will be a deeply trying year, but we will face it in our home, with the whole family together.

So we’re wending our way through the Appalachian Mountains, looming dark against the twilit sky, leaving behind the city that sheltered us while we fought for our daughter’s life.  Ahead of us lies the city that is our home, where we will fight to secure her future.  It makes our path forward immeasurably easier to know that so many of you are there to help us.  We can never thank you enough.

One Week

Assuming all goes according to plan, we have just one week left before the radiation treatments stop and we can go home.  Assuming no delays, next Monday morning we will place Rebecca into the path of the proton beam for the last time. 

In the past couple of weeks, there have finally been external signs of the process.  All along one side of her head, the side where the stream of protons enters her skull at 100,000 miles per second, nearly all the hair has fallen out.  This is a good sign: it means that the radiation is doing what it should be.  The cells in hair follicles, you see, are very much like cancer cells: always dividing.  The radiation and chemotherapy kill cells that are in the act of division.  They don’t discriminate beyond that, so any cells that are dividing the way they should be—say, growing hair—get hit the same as the cells that are dividing the way they shouldn’t—like cancer cells.

When her hair is washed and down and its glorious curly self, you can hardly see the missing area.  Anyone who didn’t know her as well as we do would probably assume the lopsidedness of her hair was a style choice.  It’s only when the hair is braided, as we do each morning to pull it out of the beam’s path, that you can really tell.

As for her personal energy, well, when her hair is down, new families at the Ronald McDonald House think she’s the sibling of a kid in treatment instead of the actual kid in treatment.  She skips and jumps and dances through life just as brightly as ever, playing silly wordplay games, swiping stuff from our pockets and laughing at her own cleverness.  She’s still five, so it’s not always fun and games; imagine a fiercely strong-willed child pushing back against a change of household, never mind a bunch of unwanted medication and treatments and new people all the time, and then add being away from her siblings for weeks at a time.  She has smooth days and rough days, and of course Kat and I also have smooth days and rough days, so the hope every morning is that no more than one of us has a rough day ahead of them.

As of the pre-dawn hours in which we got up to come to the hospital this morning, there were just five radiation treatments left.  Next Monday morning, after she wakes up from the sedation, we will retrieve our car from the hospital valet and head west.  As long as there are no schedule delays that morning, and no horrible traffic delays along the length of Pennsylvania, we should be home just in time for dinner.

Home.  It almost seems like a myth.  We did a Facetime session the other day and when I glimpsed some of the living room and sun room in the background, it took me a second to recognize it.  I wonder if it will take us a day or two to re-adjust to living in our own house.

Guidepost

As a followup to the recent public-speaking post, I want to talk about what’s happening with CSS: The Definitive Guide, 4th Edition.  So I will!

As many of you know, O’Reilly and I have been trying a new serial publication approach in which pieces of the book are released as they’re finished, generally at the ratio of one chapter per “pre-book”.  There are now five such books covering the first six chapters of the final book:

  • CSS and Documents, which covers the raw basics of how CSS is associated with HTML, including some of the more obscure ways of strapping external styles to the document as well as media query syntax.  It’s free to download in any of the various formats O’Reilly offers.
  • Selectors, Specificity, and the Cascade, which combines two chapters to cover all of the various Level 3 selector patterns as well as the inner details of how specificity, inheritance, and cascade.  It’s $4.99 to download, $9.99 to get on paper, and $10.99 to get both.
  • Values, Units and Colors, which covers all the various ways you can label numbers as well as use strings.  It also takes advantage of the new cheapness of color printing to use a bunch of nice color-value figures that aren’t forced to be all in grayscale.  $2.99 to download, $7.99 to print, $8.79 for both.
  • CSS Fonts, which dives into the gory details of @font-face and how it can deeply affect the use of font-related properties, both those we use widely as well as many that are quickly gaining browser support.  $5.99 to download, $7.99 to print, $8.79 for both.
  • CSS Text, which covers all the text styles that aren’t concerned with setting the font face—stuff like indenting, decoration, drop shadows, white-space handling, and so on.  $3.99 to download, $4.99 to print, $5.49 for both.

If you’re curious to know what other people think of these pre-books, all of the above except for “CSS Documents” and “CSS Fonts” have some customer reviews; “CSS Fonts” was recently reviewed by Virginia DeBolt.  If anyone who already has one wants to leave a review here in the comments, that’s fine too, though I’ll probably ask you to submit said reviews over at O’Reilly.

Given that all those are out, what’s next?  If I were to go by final-book-table-of-contents order, the next chapter would be “Basic Visual Formatting”, but I’m not going to do that, which is one of the big advantages of this approach.  Instead, my next topics are going to be transforms, transitions, and animations, and then flexbox.  Of course, all such plans are subject to change, but those are the topics I really want to do next, and they’re probably the most relevant topics to be talking about right now.

Given everything happening in my family’s life right now, I’m not going to try to commit to a specific schedule, because I might have to drop everything at next to notice at random.  All I can say is that I’ll be getting them out as soon as I can.

On Stage and Off

We now (sort of) interrupt the stream of Rebecca updates for a professional update.

Given the situation with Rebecca, I’ve obviously had to make some serious adjustments to my speaking and travel schedule.  I had to cancel my appearance at the CSS Dev Conference later this month, which is a bit of a shame since I was looking forward to taking the hotel elevator at night, soaking up the CSS genius from all the other speakers, and connecting with some college friends I haven’t seen in almost 20 years.  I also had to withdraw from the CERN Line-Mode Browser Dev Days, which was a real letdown for me as an amateur web historian as well as a high-energy physics fanboy.

I also had to drop myself from the remaining An Event Aparts of 2013, as well as first few of 2014.  The reason for the extended withdrawal from the AEA stage is that in the event the cancer treatments fail and the cancer returns, the odds are very high that it will do so in the first year after diagnosis.  That first year is also the period in which Rebecca will be getting some fairly strong chemotherapy, and is likely to be in and out of the hospital on a semi-random basis.  It would be unfair to pretty much everyone I can think of for me to commit to a bunch of speaking and then cancel some of it at the last minute.  I’m sorry to be absent at my own show, but life can be like that sometimes.  Like now.

I am, on some level, sorry that I had to cancel so many events.  Not that I feel like I made any choices for which I have to apologize, of course.  I’m just sad about the way life turned, and wistful for the missed connections-that-would-have-been.

This doesn’t quite mean that I’ll be total hermit, though: I have two talks happening this month, one in Philadelphia and the other in Cleveland.

The first is an evening talk at Drexel University in Philadelphia on Wednesday, 23 October.  This will be a modified version of the talk I gave at AEA earlier in 2013, tuned for the web design students who will be in the audience but of interest to anyone (who hasn’t already heard it).  It’s now called “<strong> Layout Systems”, and we’ll be kicking things off at 7:00pm, with a completely open-topic Q&A immediately after the presentation.  The event is free and open to the general public, so if you feel like dropping by the Drexel campus that night, I’d love to say hi!

A few days after that, I’ll be speaking at the CWRU ACM chapter’s Link-State 2013 conference, October 26-27.  My topic will be CSS fonts and the crazy, crazy things you can (or can’t) do with them in current browsers.  The prices are pretty great—free for CWRU students, $10 for everyone else—so if you feel like dropping by the CWRU campus the weekend before Halloween, I’d love to say hi!

Basically, I’d love to say hi.

Next up should be an update on the writing side of my professional life, including what’s next (and what’s already available!) for CSS: The Definitive Guide, 4th Edition.

October 2013
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